Due to huge response of my blog post “This Princess Has Scars” I decided to write another post about my emotional scars experience dealing with a rare disfiguring disease.
I was a adorable child So cute that at when I was about five yrs old I was walking in NYC with my dad, we were approached by a talent scout from the Ford Modeling Agency.
I remember the agent him telling my dad that I was an exceptionally beautiful child and wanted to make an appointment with me for a photo shoot. My dad a very intimating large man said to the agent, “My daughter is so much more than just a beautiful child.” He never contacted the modeling agency.
I used to hear my relatives and my parents friends exclaim ” I was the perfect child.” At that time I had a sister who was 3 years older than me and was the complete opposite of me. She was a wild child. She was sent to a all day nursery school and I felt very alone. My mom was not one to show her affection. She never hugged or kissed me but I still felt loved. She would take a long time to get dressed and I would watch TV. I was only 4 or 5 yrs old and I would sneak up right in front of the TV screen so I could clearly see my favorite shows. When my mom caught me, which was rare, standing so close to the screen she would tell me I was going to ruin my eyes. Neither of us knew at the time I was almost blind in my right eye.
My life was basically a blur until my mom noticed I couldn’t tell the time because I couldn’t see the numbers on the kitchen clock. So I got these cute little glasses. The eye doctor said my right eye had a weak muscle. To be honest. he whispered to my parents that it was very strange that my left eye had almost perfect vision. He told my parents it was possible I was born with a eye defect.
Years passed and when I was about 10 years old I was practicing my diving skills in my Grandpa’s pool and I dove too deep and scraped my lower chin on the bottom of the pool. Little did I know, that little scratch on my chin was probably the catalyst that triggered my illness.
My parents noticed that the little scratch on my chin wasn’t healing correctly. The area around the scratch was losing pigment and my right upper lip was started to lift up. The following year from the corner of my right eye down my face started to sink in. The deterioration was happening quickly. When I went out in public people started to stare at me in repulse. My parents who now had four children, including me were desperate to stop whatever was causing my face to waste away. My parents took me to every kind of Doctors who were specialists in their field of medicine. I had a biopsy down to see if I had a rare cancer, the tests came back benign. Not one single doctor could make a diagnosis. Finally in desperation, a group of top doctors decided to all get together and examine me. It was a that group exam that my parents were told that my illness was related to Scleroderma. The devastating disease that turned people into stone starting from internal organs. My case was doing the opposite. It started on my face but now X-rays were showing the disease was progressing into my gums, and my jaw bone. At the time very little was known about Scleroderma and there was no cure.
My parents were told that rainy night in NYC there prognosis was that I would never live to see my 15th birthday. I overheard the entire conversation. My parents eyes were bloodshot red on the drive back to Long Island. I knew they were holding back the tears not to upset me.
I really felt nothing when I heard I was going going to die. I know that seems strange now writing about this, but I was only concerned about my parents that night. I felt like me, their once perfect beautiful little girl for the first time let them down.
( To be continued)